Im 62, some severe health issues caring for my 32 yr old son

[bojoo]

Hi, Im 62, dx'd with cancer 5 ?years ago.  The cancer has been NED( no evidence of disease:-), but same week I was "cancer free", I developed severe Keytruda induced RA, then spinal spondylosis ( someone forgot? to tell me to tske extra calcium during radiation/3 1/2 yrs of Keytruda infusions,so now in wheelchair 75% of time,getting pain shots in back so I can walk a little...Anyway, I have been sole caretaker of my 32 yr old son, who was dx'd with severe autism at age two.  He's a great guy, but with pandemic,my health issues ect...its been/is rough.  I dont see any posts,groups about us older folks who are caretakers fortheir children, other younger family members, I can't be the only one:-(

C.Jones

[t946348h]

This is a future concern of mine as I have a daughter that may or may not live on her own one day due to her diagnosis. I'm currently parenting down for her and at the beginning of parenting UP for my parents. I have said for many years now that my focus is "What does their BEST LIFE look like?" and try to make decisions based on that. Their BEST LIFE won't look like mine and keeping that in mind helps. But I'm struggling to find resources to parent UP and hoping that AARP can provide some. I found this today after getting a mailer over the weekend exactly for an in-person event for my brothers and I to go to and I'm HOPEFULLY. 

[PaulaE427419]

You aren't the only one. My aunt is in her late 80s. My cousin--great guy but lacking a support system--moved in with her after a bad fall and dialysis. She is worried because she is a third of his size. His care is exhausting her energy and finances.

[fffred]

@PaulaE427419  Oh, my. I'm sorry for your aunt...and your cousin. I really thank god that my own situation is as good as it is. Some of the situations I read about where people are in really awful situations... very sad. Life isn't really or always like the happy episodes we see on television and movies.

Sometimes life just hands you garbage through no fault of your own. Sometimes it is partially ones own fault due to bad choices, etc. But who chooses awful health conditions? ...no one does.

I don't know what to say to support you and @bojoo and others in similar situations other than to acknowledge how awful this can be. Peoples' experiences like these are sad and hearing them makes me more appreciative of my own situation and more compassionate to others.

[bojoo]

PS:  we live in Neb. my folks live in florida, Ive not been able to see them in years now:-( Can't really fly with my son, so hopefully some day soon can drive there to see them, Miss them so much and you can figure out from My age, Im extemely lucky to still have them in my life, Love you mums and dad!!!!  I Will figure out way to come see you!!!:-)

[fffred]

@bojoo 

wow, that sounds awful and I am sorry to hear of your troubles. Though your post did make me think that maybe I should be taking some extra calcium as well...I am 70 and have arthritis (maybe calcium will help my back), etc, but nothing like what you have been through with health issues.

Wife and I drove from Florida to Montana last year, passing through Nebraska. That was quite a tiring drive, I don't recall how many days we took for the stretch to Nebraska (driving time was limited due to having our two cats with us). I would suggest rethinking not being able to fly, at least then the misery will be over in one day. Although on the other hand the flying experience these days (pandemic, airline economics) is quite miserable as well. It's tough call.

I see a few forum topics here at the AARP forums where you might find some people to discuss your caretaking role at your age (the one you posted in is the most appropriate). There is also Facebook...there are discussion groups there as well (like AARP's) many of the best ones are "locked"...you have to ask to join...and are well moderated, so all the knuckleheads are kept out. I joined one there several years ago that is about "widows and issues with Social Security"...this was/is a topic of interest to me as I want to make certain my wife will be in good financial shape should she become my widow.

I know there are tons of forums/discussion groups on the internet and I'm sure you should be able to find some for your situation. The trick is to find one that has sufficient traffic where people regularly post. 

The internet chat rooms/forums can be very helpful, in my opinion. I suppose it's no wonder that they are very popular. (I actually met the woman who later became my wife through a forum on a shared interest, 25 years ago).

Wish you well.